One of the fastest growing health care trends in “individualized medicine” is home genetic testing. The over-the-counter mail-in kits, with price tags as high as $2,500, use a saliva specimen to identify small variations in the human genome associated with heightened risk for diseases such as diabetes and prostate cancer.
The U.S. Food and Drug Administration (FDA) has raised concerns about whether the tests are clinically beneficial and has advocated they be conducted under medical supervision, but few studies, to date, have investigated the emotional effects that direct-to-consumer genetic screens have on patients.
Now that’s all changed. A group of Mayo Clinic physicians and bioethicists have analyzed whether these genetic tests cause patients to experience excessive worry about developing diseases. “We looked for evidence of increased concern about disease based solely on genetic risk, and then whether the concern resulted in changes in health habits,” said co-author Clayton Cowl, M.D.
The randomized study found patients’ worry tended to be modestly elevated one week after the genetic testing, and that people worried more about unfamiliar diseases, for instance the thyroid condition Graves’ disease than those commonly known, such as diabetes.
One year later, however, patients who had undergone testing were no more stressed than those who hadn’t. One surprising result was that men whose genetic risk for prostate cancer was found to be lower than that of the general population, and who also had normal laboratory and physical screening results for the disease, were significantly less stressed about the disease than the control group.
The researchers concluded that the tests may be useful if they prompt patients to make health-conscious changes, such as losing weight or being vigilant about cancer screening.
However, some doctors are concerned that patients who learn they have less-than-average genetic risk for a disease might skip steps to promote good health. Others just think it’s a bad idea – period. “Genetic testing is a complex, difficult and emotionally laden medical process which requires extensive counseling, contextualization and interpretation,” says Dr. Michael Grodin, professor of bioethics, human rights, family medicine and psychiatry at Boston University.
It’s also worth noting that the current study only assessed the emotional effects of do-it-yourself genetic testing. Nobody yet knows whether a calculation of genetic risk accurately predicts disease.
Have you bought one of these kits? How did you feel while you waited for the results. SRxA’s Word on Health would love to know.